Autism thread

Gewy, I'm so sorry to hear you guys have it so rough. I sometimes walk away from tantrums with a bruise but we haven't had hair pulling so far. I really hope you two can get a breather when he starts the 40 hour week. And fingers crossed, that will yield some progress.

Thanks for the responses on the GF diet. Neither of us are gluten intolerant, but Matt does have (sorry, TMI) stinky, softer stool these days, so my husband is convinced it would help. I'm really skeptical, like is said earlier today, having read a randomized control trial and a literature review which showed no improvement with a GF diet. And to be fair, I already have to wrack my brain when one of our friends comes over for dinner (she has celiac disease), so I'd really hate doing this every day. Bread and wheat in General is just a central part of our diet...

My son's staple foods on the diet became: cut up hot dogs, diced ham, veggie sticks, mashed sweet potato (lots of brown sugar and butter substitute), occasionally lima beans, French fries and various fruits. Not the healthiest, but could be worse.

We gave him grilled cheese again today and he really chowed down on it. I guess he missed it.

Eleima wrote:

I think I recall PurEvil trying out this diet to no avail, right? Anyone else?

Yes, but just remember that my wife and oldest boy are gluten intolerant (wife can handle the symptoms, son is far too sensitive to it). What I'm seeing is that the times he has gluten introduced into his diet (typically when he's sharing food with me, or days he's at daycare), I don't see any change in behavior. But that could very well just be my situation, so I wouldn't discourage anyone from trying it out.

It's brutal at first though. My suggestion to anyone going this route is to try to cut out wheat products when planning a meal, and only use the gluten-free alternatives when you find a good brand of what you're looking for. So far, we love the Schar brand pastas, because you can't tell the difference (besides cooking time is a bit longer). Just about everything else tastes like you're eating cardboard. Let me go check the pantry...

A few other brands we've enjoyed:

Schar pasta and stuff (haven't had anything we really didn't like from them)
Pamelas Gluten/Wheat Free Baking Mix
Pamela's Gluten Free Cookies
Betty Crocker Gluten Free Mixes
Bisquick Gluten Free Mix
Annie's Gluten Free stuff (Mac&Cheese and cookies)

Edit: My wife informed me that I was wrong on the pasta. Schar is still pretty good, but the one we normally buy is by Bionaturae.

Also, rice cakes that you get in the breakfast section of most stores are great for snacks. And Cheerios and Chex brand cereals are good too, and have different flavors.

Most nights I cook, I cook a meat, a vegetable, a fruit, and with certain meals, I'll add some kind of potato or rice. No bread, no breading, etc. This keeps the meal a bit more simple, and keeps us from eating something in front of Sabastian that he can't even taste because it'll make him sick.

So my son may have forgotten how to give people "high fives" at therapy yesterday. That's one of the skills they're working on and one of the few he seemed to have mastered. This got me mentally cataloguing all the skills he's picked up then lost a couple weeks later since he was one year old. It's a lot.

He's had five different word approximations at various points. He could follow a couple of very basic commands. He could identify a few pictures at one time. Once he would try to imitate a particular piece of classical music on one of his toys. He tried to kind of brush his teeth for a while. Some other motor imitation. All very basic stuff, but still a big deal for him. But none of it "stuck". It's all seemingly gone.

Very depressing. Feels like we're trying to build a tower but every couple of weeks someone comes along and smashes it up so we're always starting over again from scratch, never getting anywhere. He's basically still functioning around a 12 month level at 3.5 years.

So anyway, I've been desperately reading about this kind of thing, trying to find some hopeful information or some ideas or answers. Seems like our son's development (or lack of really) is a bit unusual to me. There are a few case reports and some anecdotal accounts of kids who have undiagnosed epileptic activity during sleep that caused trouble with memory and learning. In some of these cases things got better with anti-seizure medicine.

So we have an EEG set up for next month. It will be at home, for 24 hours. Gonna be sheer hell keeping him from pulling off the leads. I'm not too optimistic this will result in anything too promising, but like I said, I'm starting to feel kind of desperate at this point. The future is looking pretty rough unless something changes.

I've checked in on this thread from time to time in part because my wife's cousin's daughter is autistic. I wanted to chime in with two things. First I'm impressed with how each of you is taking it day to day with this incredibly challenging dimension of parenting.

Second, I'm happy to share a story. The earlier mentioned cousin's daughter recently turned eighteen and has started her transition to Adult Services. She just got a job placement with her previous school and is helping the music teacher with the autistic kids there. Her mother's words "Never did I think that my autistic daughter would be able to teach music to younger autistic children. My heart is full! I have to say to parents raising special needs kids, keep the faith always, things can always change for the better!!"

I know it's just one story but having known the family for many years I recall them facing many of the same challenges you describe. I hope in the years to come many of you will have your own "Never did I think..." stories.

A year or two ago, my wife was brought to tears seeing our son ride his bike, without the support-wheels, on his own. Never did she think she'd ever see that day. We were so happy.

I had my first appointment with a local psychiatrist. I'm not impressed. My plan is to have him as someone who can prescribe me the same stuff I'm already taking until I can get into the autism clinic. Because he seems to have less of a clue about how autism works than most. Even though I gave him the emails from the people who diagnosed me at age four, he seemed to think I had Asperger's, which is bunk for two reasons:

1. The diagnosis of Asperger Syndrome was discontinued last year with the DSM-V.
2. He seemed to be of the impression that people with Asperger's have speech delays, while people with autism can't speak at all. Mind you, the DSM-IV specifically says that speech delays rule out Asperger's. He seemed dismissive of my pointing this out. Again, a quick glance at the emails from autism experts would have clued him in.

Sure, I knew he wasn't likely to be an expert on autism, but at least a "hmm, let me look into this so I'll be more prepared next session" would have been nice.

Hell, even asking me to sign a HIPAA release so he could get in touch with my previous psychiatrist would have been nice. Especially since one of my meds is a controlled substance.

The appointment starting 75 minutes late also wasn't very impressive. A "sorry I'm running late" would have done wonders.

This new psychiatrist's diagnoses, which I take with a grain of salt:
PTSD
Mild depression
Generalized Anxiety Disorder

I have an appointment with a cognitive neurologist in September, and they don't have space for evals until at least December. But maybe I won't need a full eval, if the cognitive neuro can just get a hold of the nursery docs.

I would be frustrated with that visit. I hope the next doctor is much more helpful.

What the psychologists at the Center for Disability and Development told me is that the ADOS is the current gold standard for diagnosing ASD in children. Would you happen to know if that is the case for adults as well?

It will be great when ASD and other such disorders can be diagnosed through means other than observation of symptoms alone.

ETA: gewy, that would be really, really hard. I hope that if seizures do happen to be a factor that it means you have a more definite path to take.

Eleima: I didn't know PPD was a factor as well. Big hugs to you.

We are in the middle of bootcamp potty training my son. That means no diapers. He is getting into the habit as we are having him visit at 30 minute intervals. But with him, as I understand with other children on the spectrum, is that it just doesn't seem to bother him that much, and as you know, social pressure doesn't necessarily mean a whole lot. We will keep working on it.

Gah, I'm so sorry to hear that, Dee, that's so frustrating. Unfortunately, most doctors hate admitting they don't know something, so a lack of "hmm, let me look into this so I'll be more prepared next session" doesn't surprise me. Which is really a shame. I really hope the cognitive neurologist has better answers for you.

Gewy, trust me, I feel your frustration. It's just so hard seeing all that the little progress that had been made is gone. I really hope it comes back. And best of luck with the EEG, I can't imagine it'll be easy keeping that cap on him. I fully expect that we'll have to do the same

Thanks Rahmen and Wink for the positive stories. It's really, really hard to stay positive when you see all the progress your child hasn't made.

Not much is new on my end. My husband is pushing the GF diet and is even reading up on wifi and the like. I fully support his "do everything we can" mentality, but this is getting a bit much. It'd be nice not to hear that maybe my son is autistic because I was holding my phone as I was breastfeeding him and that maybe, if I keep doing this, maybe our second son will follow the same path. Gee, thanks.
And to add insult to already serious injury, post-partum depression is really kicking my butt, so yeah. Fun.

ETA: Yeah, Concentric, it's pretty much been confirmed by my psychiatrist, so that just really sucks. (I'm still gonna ask her tomorrow to confirm, to say "you have PPD", because hubby's basically thrown in my face that I'm a hypochondriac)
I hear you on the difficulties with potty training. One day, we had a blowout at family's with no extra diapers on hand, and tons of poop coming out the sides. Didn't phase him one bit, he just kept on running all over the place.
In the evening, ours will sometime climb on the toilet and pee, but he has to be stark naked, and it has to be before shower time. No luck trying to explain that you don't shower every time you go to the bathroom and that peeing only requires removing your pants, not your shirt.

Eleima wrote:

Not much is new on my end. My husband is pushing the GF diet and is even reading up on wifi and the like. I fully support his "do everything we can" mentality, but this is getting a bit much. It'd be nice not to hear that maybe my son is autistic because I was holding my phone as I was breastfeeding him and that maybe, if I keep doing this, maybe our second son will follow the same path. Gee, thanks.

I went through that in an effort to find an answer. I could accept my son's diagnosis but I needed to know the WHY.

When he was an infant, our son would only sleep through the night with white noise. So we plugged in my wife's iPhone on the nightstand next to his crib and ran a white noise app. We wondered if his diagnosis at 15 months had anything to do with cell phone radiation or the wifi from the iPhone.

I could tell your husband to stop searching but I know it won't do any good because I've been there. He will come to that conclusion in his own time. The only thing I will stress is not to go down the chelation route. I'm a skeptic in all areas of life but it's frightening to see how open I was to woo when the person I loved the most in my life was afflicted with something. I can totally understand now the desperation some people feel when they decide to try quackery despite everything in their brain telling them that it's bullsh*t.

I still have some "medical" books and white papers from a doctor who was supposed to be at the forefront of chelation therapy for autism. These items were not cheap but I will not throw them away. I need to see them to remind myself how dangerous quackery is, how it preys on people who feel hopeless in search for aid for their loved ones, and how my own desperation to "fix" my son almost brought me to a point of hurting him to try to change who he is.

It was at that point, at my lowest place, when I finally realized that my son is who he is and I need to accept him for that - quirks and tantrums and everything, give him all of the love deserving of a wonderful son, and quit trying to "fix" him because he is not broken. It wasn't my son that needed changing, it was me and how I interacted with him.

FSeven wrote:

It was at that point, at my lowest place, when I finally realized that my son is who he is and I need to accept him for that - quirks and tantrums and everything, give him all of the love deserving of a wonderful son, and quit trying to "fix" him because he is not broken. It wasn't my son that needed changing, it was me and how I interacted with him.

I love how you phrase this. I love how many big hearts are here at GWJ. It makes the tough parts easier to handle.

FSeven wrote:

It was at that point, at my lowest place, when I finally realized that my son is who he is and I need to accept him for that - quirks and tantrums and everything, give him all of the love deserving of a wonderful son, and quit trying to "fix" him because he is not broken. It wasn't my son that needed changing, it was me and how I interacted with him.

I love this. I too struggled early on, even prior to the diagnosis. My wife and I both agree that the diagnosis has been a blessing as we now know that it wasn't our parenting that was contributing to difficulties Owen was having, but his ASD diagnosis. We have moved on, and my son brings MORE joy to this house than I could ever imagine. I wouldn't want him any other way.

Wink & Rahmen - wonderful stories.

gewy - My heart goes out to you. I know there's nothing that can be said to make your situation any better.

concentric wrote:

I love how many big hearts are here at GWJ. It makes the tough parts easier to handle.

Same here. I'm sure none of us have the energy to seek out local autism parent groups so having this little group here on GWJ, even if it's based on unfortunate circumstances, makes it all much easier.

*group hug*

sometimesdee wrote:

Stuff about psychiatry appointment.

I'm not surprised that's how it went. Most psychiatrists basically just focus on prescribing medication, and, since there's not really any medication yet to address the core symptoms of high functioning autism, they're probably going to be clueless about it.

Thanks, FSeven. I'm in full agreement with you, I keep saying that our son is just different, not sick or in need of fixing. My husband says he doesn't want to fix Matt, but that he wants to help him in any way he can. I guess I need to let him walk his own path.
Yesterday morning, I went with Matt to the speech therapist appointment for the first time (my first, his thread). It's so disheartening to see him toss toys, cry and scream and all around act out. We are in full agreement on this, we need to do everything we can to help our son and his chances in life will be improved if we start now. Except there are very few "Early Intervention" opportunities here, as I might've said before. The future is still uncertain, but we're very seriously contemplating immigrating to Montreal in Canada. We've found a couple of centers that could take us and have behavior, speech therapists, etc. we've set some money aside for a rainy day, so we're fully prepared to pay out of pocket.
It gets a bit complicated for work, though. I need to finish my residency and start working before I can apply for a work permit in Quebec province. I need to pass French and English exams, which shouldn't be a problem, but I'm concerned that my specialty (public health) isn't prioritized any longer (unlike general practice, for example), so I have no guarantees, job wise, once I get there. We're still willing to risk it, if only for Matt's sake but also our own. Having grown up in DC but being technically French means I've always felt a bit lost, different. Canada would be a great way to find that dual culture thing I've been yearning for.

Not to mention that time is of the essence and that we would have more resources to help Matt in North America.

Maybe others here have seen this article in today's NYT, about the benefits of mindfulness for parents and other caregivers. I started mindfulness meditation years before I had my son, and for me the practice has been so helpful in general, and in particular in dealing with our situation now. I know it's reduced the amount of anxiety I have in addition to making it easier for me to act rather than react.

We took Owen to a Day with Thomas this weekend. Made a whole trip out of it, as it was 4 hours away.

He had an absolute blast, and the look on his face for the first hour was priceless. It was like all of his dreams came true!

It's so interesting to me that kids with ASD seem to LOVE Thomas. I know he's done wonders for Owen's language.

IMAGE(http://i.imgur.com/1JWmjxp.jpg)

I wish we could have a day with Thomas here! My son is also a big fan. But what he has been wanting to watch most frequently is the MST3K version of "Sampson vs. the Vampire Women." Known by him as "scary robots."

Great picture!

We're getting a new bedroom furniture tomorrow. This was actually my idea, since we got the current furniture when I was ten. I'm hoping that new furniture will lessen the nightmares about my childhood a bit.

But autism + change = bad times.

I would have loved to just junk the old stuff, but my mom wants to put it in various other rooms. The problem is, the furniture delivery folks won't move the old stuff, so now we have to do it ourselves.

Also, I have to move all my clothes and crap out of the old furniture and put it in the new.

So while I've started clearing off my dresser, I'm currently holed up in the basement because I'm still avoiding the bulk of the work.

I really would kill if my son would develop an interest in something, anything, other than randomly wandering around, hitting and biting things.

Is that Strasburg? (I'm like 15 minutes from there.)

stupidhaiku wrote:

Is that Strasburg? (I'm like 15 minutes from there.)

St. Thomas Ontario

Gewy, I'm sorry to hear your son isn't improving. Many, many hugs.

Best of luck for the change, Dee. Moving furniture is annoying no matter who you are, but yeah... Thinking of you.

Thanks a bunch for that link, Concentric. “A long line of the most nervous women,” gosh that sounds familiar. I really need to get back to yoga, I did me a world of good when I was pregnant with #2. Taught me "just breathe, this is just a moment in time, this too will pass."

What I'm really struggling with currently isn't so much Matt, getting him appointments and how difficult the sessions are, but the huge disconnect between me and my husband. We'd been struggling in the past months, but with everything that's been happening, it's been very hard. My husband was shook to his core when he finally realized how far behind Matt was. He says he feels alone, that his world has shifted and feels mine hasn't. I've been trying to shoulder everything and carry on as best I can, because I have a lot of work stuff coming up, a thesis to finish by October, I need to start job hunting, especially since our plans are for Matt and my husband to go get help in Canada, I'll now be the primary breadwinner. I'm trying to do what I can, help out at home, but that's not how he sees it. And it's true that sometimes, like last night for instance, Matt will throw these huge fits, crying and screaming, utterly inconsolable, and I'll have no other choice than to let him ride it out. Because I have #2 to nurse, because if I try to hold him, he'll hit me, and rock himself back so violently he'll hurt himself or me. I'll willingly admit that at times, I just don't know what to do anymore. And my husband resents me for not trying hard enough.

Eleima wrote:

Gewy, I'm sorry to hear your son isn't improving. Many, many hugs.

Best of luck for the change, Dee. Moving furniture is annoying no matter who you are, but yeah... Thinking of you.

Thanks a bunch for that link, Concentric. “A long line of the most nervous women,” gosh that sounds familiar. I really need to get back to yoga, I did me a world of good when I was pregnant with #2. Taught me "just breathe, this is just a moment in time, this too will pass."

What I'm really struggling with currently isn't so much Matt, getting him appointments and how difficult the sessions are, but the huge disconnect between me and my husband. We'd been struggling in the past months, but with everything that's been happening, it's been very hard. My husband was shook to his core when he finally realized how far behind Matt was. He says he feels alone, that his world has shifted and feels mine hasn't. I've been trying to shoulder everything and carry on as best I can, because I have a lot of work stuff coming up, a thesis to finish by October, I need to start job hunting, especially since our plans are for Matt and my husband to go get help in Canada, I'll now be the primary breadwinner. I'm trying to do what I can, help out at home, but that's not how he sees it. And it's true that sometimes, like last night for instance, Matt will throw these huge fits, crying and screaming, utterly inconsolable, and I'll have no other choice than to let him ride it out. Because I have #2 to nurse, because if I try to hold him, he'll hit me, and rock himself back so violently he'll hurt himself or me. I'll willingly admit that at times, I just don't know what to do anymore. And my husband resents me for not trying hard enough.

If you are considering coming to Canada, I hear that Alberta has the best services available for ASD kids. Here in Ontario, the waits can be very long for service. Owen was diagnosed in December and we are still on the waitlist for any kind of solid ABA program. He gets 8 week stints of once weekly joint OT/Speech which really aren't that helpful at 45min. a pop. We pay a private ABA therapist to come a few days a week which has made the most difference for Owen.

Just be careful, and do your research before making that jump. If you need any help navigating, let me know via pm.

"Not trying hard enough?" What else are you supposed to be doing, especially when you have an infant to care for?

Ah yeah, Eleima. This stuff has really strained our marriage as well. Not that we're about to get divorced or anything. It kind of feels like it's us against the world a lot of the time.

The tough part is that whenever I'm doing somewhat OK with things, odds are my wife is irritable or saying a bunch of negative stuff, which brings me back down. Then if she's in a relatively good mood, I probably have the same effect on her.

Seems like a move will be in our future... Just across town though. Need to get to a better school system and a house better suited for autism. Enclosed yard. Bedrooms that aren't on top of each other so at least someone can get a good night of sleep without hearing little guy stomp around at 3 AM. Also child's bedroom on 1st floor because we'll probably be physically carrying him to bed forever, since he can't follow directions. Our backs are getting stiffer and stiffer carrying him up the stairs.

Really not looking forward to the stress of finding a new place and moving. I can't imagine how much worse it would be to a different country.

The other big decision to make is when to give up on paying for all this therapy with little results. When should we just throw our hands up, put him in the school system, which doesn't really have a good plan for teaching someone like him, so we can save the money for the back end, when he's an adult? Right now I'm thinking to give it another two years but if he's not made progress by then, I don't think it's going to happen. I feel like the odds are already against it.

Gewy, it's tough to say, but the route we've chosen is to try as much therapy as we can now, even though we might sink what little funds we'd accumulated so far (for college, ha!). All I've read seems to suggest that the early years are key. Then again, like I said, every case is different, and you as the parents really know best. What about the therapist(s)? What do he/she/they have to say?
And I hear on the marriage stuff. We're not always on the same side of the scale either, and there's a host of other stuff that predates Matt's autism, but I don't want to LiveJournal.

Thanks a bunch, El Producto, and I'll definitely take you up on that should we need it. As for now, we've set our sights on Québec, simply because we are of French culture, and Matt's been mostly growing up in a French culture so far. I'm the only who speaks (spoke? I've been told to lay off the English so we can hone his French...) English to him. Québec seems like a perfect fit, with the strong Québecquois identity and yet very North American culture. Immigrating wouldn't be just for Matt's sake, it would also be for ours. My husband has always wanted to travel abroad, and going back to North America, although it wouldn't be the DC of my childhood, well... this is going to sound weird, but immigrating to Canada would be a bit like coming home. We'll see, don't want to get my hopes up, there are a lot of hoops to jump through.
And we're aware that things are backed up in the public sector, we're already looking into private centers and found one that would take us pretty quickly. We have some money set aside, and if there ever has been a rainy day, this is it.

sometimesdee wrote:

This new psychiatrist's diagnoses, which I take with a grain of salt:
PTSD
Mild depression
Generalized Anxiety Disorder

I had my appointment last week, with similar results. Social anxiety disorder, stress, and something else. Anyways, his recommendation was many sessions of talk therapy, because I made it pretty clear I didn't feel I needed any kind of medication. Then I got to come home to my wife basically getting on me about how I was making it up, and that if I was on the spectrum, she or my previous doctors would have been clued in to it.

I had a lot of testing done a number of years back, but it was mostly focused on depression, which I don't feel I've ever really had. Anyways, it took me months just to get that appointment, after hours upon hours of trying to find someone who took my insurance, all for something I don't feel I'll ever get, which doesn't actually impact my life much... so I'm done trying. It's really not worth it for me.

PurEvil wrote:

Then I got to come home to my wife basically getting on me about how I was making it up, and that if I was on the spectrum, she or my previous doctors would have been clued in to it.

all for something I don't feel I'll ever get, which doesn't actually impact my life much... so I'm done trying. It's really not worth it for me.

(emphasis mine)

I'm living proof that the spouse and previous doctors don't always get a clue. My husband expressed his doubts about "the memory of some 80-year-old who saw [me] 30 years ago." My mother handed the school psychologist and anyone else who asked my records from the nursery, including the diagnoses and evaluations, and they still had no idea. That's about as close as you can get to hitting them with a cloo-by-four without breaking the law. (The school misfiling my records didn't help much.)

But it's your decision whether to go through with getting tested. If it doesn't affect your life that much, then it might not be worth the trouble.

For me, however, I've always been obsessed with the mind and the brain, so I can't miss an opportunity to find out about my own brain and its development.

A friend sent me this this morning: When the Caregivers Need Healing. Something to think about.